Saturday, November 14, 2009

Special Notice

The wife stood in line for three hours today to get the baby a pug vax. We hadn't planned on it taking that long so she brought the Girl with her. The line stretched around the block at a local middle school. I sympathize with my wife and felt badly that she was stuck with the girls alone.

As you can imagine, three hours leaves plenty of time to chat with your fellow vax waiters. At one point a woman was walking down the line and my wife asked how far the line went back. The woman answered my wife and then stuck around a while as she and my wife shared their gripes about the whole process. During a small lull in their conversation the Girl piped in, talking about one thing or another. The woman listened to the Girl intently and then asked my wife discretely, "Is she "special needs?" She didn't say it rudely or obnoxiously, just understandingly. My wife said yes and explained the Girl's circumstances.

When my wife told me this story I found myself asking for details: what had the Girl been saying? how did she speak? did the woman ask knowingly or curiously? I needed to know what this stranger had used to glean her perception of my daughter.

We discuss the Girl's issues in our home regularly, hardly a day goes by without a conversation about it. We have talked to her therapists and doctors about it over and over. We are fully aware of the extent of her problems. We are not in denial. However, when my daughter's disability is obvious to a total stranger during a brief meeting, well, that is something akin to a punch in the gut. It is no longer our problem - mine and my wife's - to worry over, plan for, contend with. It is now my daughter's problem, and no matter what we do the world will notice it more and more. And the world has never been known for its kindness.

I told my wife I was glad it was her that spoke with the woman. It it were me I think I would have started crying.

An addendum: My wife told me that as they waited their three hours in line today many of the kids ran and played on the large grassy knoll next to the line. Two girls, sisters, joined Flyn in a game. As Flyn began telling them a story of some kind the younger of the two girls said, "What? I can't understand you." Her sister stepped in and informed her younger sibling, matter of factly, "It's ok. She still talks baby."


Blaize said...

The world has never been known for its kindness, it's true. But you and your family and your kindness will help.

I read another blog--
where the son of the family has been working with a speech therapist for his apraxia. He's really improved. I know that you say apraxia is only one of Flyn's problems, but not "talking baby" could also buffer her against some of the world's unkindness.

When I was 9, my sister got cancer, and for a couple of years our family life was about that to a large extent. Even after she survived and was cured, our family remained marked by having been sick. When one member of the family is sick, the family is sick.

My sister's illness changed our family, and changed me. But here we all are, as adults, and you know what? Things are pretty okay.

I hope that things are pretty okay for your family in the long run. I'll be thinking of you.

arlopop said...

I think you speak to one of our issues. Flyn's problems have had an affect on our family as a whole, from the amount of time dedicated to her various appointments, to the amount of conversation dedicated to discussion of her, to the financial resources dedicated to her diagnosis and treatment, to literally considering a move to make certain treatments - public or private - are available to her. My days are not just filled with concern for her well-being but for the consequences to the rest of the family. The kids' college funds haven't seen a dime added by us this year.

I know it's what family is - hell, evolution has designed us to group ourselves into these units to support one another after all. All the same a horrible Sophi's Choice sort of calculus starts to work its way into this as I begin to wonder how much should we draw down from her siblings in terms of quality time and resources in order to help her. It isn't pretty.

Though your family seems to have handled your sister's illness well I fear as time goes on Flyn will so become the focus of our family that that might be more damaging than anything else. From sibling resentment to a sense of familial entitlement and victim-hood for her. The fact that your family did well may have more to do with luck or just plain better parenting.

I may be misunderstanding you when you say, "I know that you say apraxia is only one of Flyn's problems, but not "talking baby" could also buffer her against some of the world's unkindness." Forgive me if you meant something different, but Flyn isn't using "babytalk". She is speaking legitimate sentences constructed of complex ideas. It's her phonological disorder that makes the words difficult to understand. The young girl's impression was that it was gibberish, but that is understandable.

Flyn has had speech therapy for nine months and sadly there has been little improvement. Her vocabulary is larger, her sentences more complex, but the overall articulation is unimproved. Her special ed teacher had been out with an illness for the last five months and returned last week. She was eager to see Flyn after the gap thinking that could give her some distance to assess any progress. After 45 minutes with Flyn she could discern very little improvement in her speech and was unpleasantly surprised by it. She felt there wasn't even any progress that could be chalked up to Flyn simply aging five months.

Flyn understands language far more completely than other children her age. Her passive language skills are ahead of schedule and so the comments others might make regarding her disabilities will be readily understood by her. Her therapists have taken to discussing with us privately their longer assessments rather than have her hear them (they can be negative).

I sometimes think to myself, "there are families out there with children far more disabled than Flyn, and whose resources are considerably more limited than ours, so what am I bitching about." Nonetheless, there seems to be be something particularly cruel about Flyn's case (and those case of others like her). The fact that she is so bright - so damned smart - but is unable to express it with the ease with which we do is a real smackdown. Combined with the perception that she will no doubt experience from others that she is somehow mentally disabled, it just doesn't bode well for happy days.

Better, I wonder sometimes, if perhaps this had been accompanied by blissful ignorance for her as well.

Blaize said...

I know that she's not actually using "baby talk" just that improvement in that area would keep other kids' judgment away to some extent, I guess. And I guess the reason I focused on the apraxia was because I know that there are actually continued services available for that.

However, your story of her lack of improvement is mightily disheartening. As for what you are "bitching" about, disability is not a contest. It doesn't matter if another family has it "worse." You have every right to worry and complain. It's your daughter; your worries are valid, and show your own thoughtfulness and loving heart.

As for my own family, the time-limited nature of my sister's illness undoubtedly has something to do with our relative health as a family now. Although I will say that having her sick changed the family forever, and that getting past it required lots of time.

Finally, I will say that I have no idea what you are going through (I hate it when people say that they know just how you feel).

Blaize said...

Also, sorry for the cack-handed comments. I have sincere sympathy; I'm just not that good at articulating my thoughts on this one.

arlopop said...

I didn't take it that way, Blaize. I never doubted your concern or sincerity.

Baywatch said...

pug vaccine. lqtm.